Has anyone been in a battle about how bad their brain is?

[LobDam]

I woke on day and brain had changed. 25 years years later and an unrelated MRI it was discovered I had a frontal lob cavernoma. But it was very small and some experts say incidental, other so no it is causing your problems. But this aside I know my memory is getting worse and it has been for the last 25 years. Has anyone had a worsening of their cognitive functioning with no known cause? The cavernoma shouldn't be doing this, its stable.

However did you go about proving it was bad? Has anyone had a working MRI? Or one of the more powerful scanning procedures that has exposed the true extend of their problem? Cheers

[Pairofboots]

I've been on a journey over the last four years. I didn't feel anything was a problem, yes memory of a goldfish, but nothing major. The GP picked up on a change, that set off a whole raft of tests, scans, assessments, all showed a deterioration, each time I was told it was nothing to worry about, until I was told there was a dementia and was referred to a bofin who ordered a lumbar puncture, this came back clearly that there was nothing wrong. I've now been referred to the community mental health team, these had previously (about 10yrs ago) had said that they could not do anything because it is a brain injury, not psychiatric. So I'm still none the wiser. Good luck 🍀

[heathermr]

Twenty years ago I was struggling with memory problems, confusion, so much so that I was diagnosed as having dementia. At the time it was thought to be Alzheimers but over time I finally managed to get to the bottom of my thyroid problems and started treatment with T3 medication. This made a huge difference to my mental state and I now know I have metabolic dementia caused by inappropriate treatment for pituitary failure. It's taken me 20 years to sort out that my pituitary has failed after a head injury many years ago and that all of my endocrine system needs to be replaced. The T3 has made the biggest difference to brain and as long as I keep taking the medication to keep my brain working but my local endos haven't got a clue how to treat me. I had to find a special pituitary medic to treat me and I see a dementia consultant to ensure that I get the right treatment to keep the dementia relatively stable.Heather

[LobDam in reply to heathermr]

Hi This is very interesting, sorry for such a late reply. Is this something that is picked up in normal blood tests? I've had many over the years, so I'd think this would be something they'd have spotted. I have a very bad fatigue problem, could this be related? I'm also small, which I know has links to the pituarity gland. But at 52, growing stopped long before my condition started I also can't loss weight, I'm only 1 stone overweight, but I've made so many long term changes, and it doesn't shift. Not sure if this is a clue.

[heathermr]

To be quite honest the local Endos did not have a clue what was going on as my TSH and T4 were both zero which was blamed on me taking T3. This was the only thing keeping me alive. Finally I stopped the T3 for 2 weeks and nearly died in the process but the blood tests were completely unchanged. Even then they hadn't got a clue how to treat me. I struggled on for many years until my research pointed towards pituitary failure which the Endo told me was not possible I finally got a referral to a pituitary specialist. He ran an MRI which shows the pituitary as shrunken down probably as a result of the head injury. He has now treated for all the missing hormones but really the local Endo does not have a clue. It is really worrying how naive they are, even though my dementia has been caused by their total mis management of the situation.